In There SomewhereFor Marilyn Filley '88, raising a child
with autism is a challenge for both the heart and mind.

By Rachel Stewart Johnson '96

Three-year-old Damien Pitt’s diet consists of seven foods. Settling upon
the tiny scroll of foods that does not disrupt his sensitive digestive
system has been a series of missteps, of leaps of faith with no room for
error.

Each day, his mother, Marilyn Filley ’88, prepares the same menu for her
curly-haired toddler: three types of unprocessed meat, carrots, avocado,
pear-sauce, applesauce and nothing else.

Damien has autism. His diagnosis, delivered before he reached age 2,
makes him part of a growing population. He is one among thousands of
tots diagnosed each year whose varying array of social, linguistic,
sensory and immunological symptoms profoundly shape their development
and pitch their caregivers into new lives, saturated with challenges
both diverse and enduring.

Filley and her husband, Daniel Pitt, find themselves scanning Web sites
nearly every day to research their only child’s disorder. “It’s like
riding a roller coaster of hope,” Filley says. Their efforts have forged
their belief that Damien suffers from a medical illness rooted in a
disastrous combination: a vulnerable immune system and an increasingly
toxin-rich world.

They follow the treatment regimen espoused by a national organization
called Defeat Autism Now!—heal the ravaged digestive system with dietary
restrictions, minimize exposure to heavy metals and other environmental
agents, and pursue conventional behavioral therapy.
The Filleys have become pioneers in this approach, a reality that adds
to their battles. They battle the medical establishment, which views
such treatment approaches as a fringe phenomenon. They battle the public
school system, a potential antidote to the staggering costs of private
therapy but one laden with bureaucratic hassles. They battle the daily
trials of caring for a child whose needs are many. There are emotional
battles too.

“I just ached for the connection that I saw,” says Filley, referring to
her observations of mothers and children during Damien’s second year,
when his disability was becoming apparent. Professionals asked
questions: Does he respond to his name? Does he point to objects to draw
your attention to them? Does he use language in a meaningful way?
Children and adults with autism are characterized by a markedly
different interpersonal experience. It is not that they fail to secure
deep bonds with loved ones, or that they eschew physical
affection—Damien’s hugs for his mother and father are many. But the
nature of the connection between parents and autistic children is
complex. It may be shaped at one moment by the child’s communicative
limitations, then later by the sensory and emotional upsets that can
occur without warning.

“You never realize how much you want to experience the joy of
parenting—you just assume it will happen when you have a child. And to
have the challenges of parenting tenfold but to not have the rewards of
sharing, really sharing, your life with your child is painful,” remarks
Filley. She points to a fundamental difference between her experience
and those of parents of non-autistic children: “I don’t know what it’s
like to have a child who wants to please me.”
Autism has received increasing attention among researchers in the past
two decades. The reason is simple: look at a graph plotting the rate of
autism diagnoses over the past 20 years and the line crawls steadily
upward, unrelenting. A condition that once was noted in four to five out
of every 10,000 children is now attached to more than one in every 200
children. The crisis has drawn the media, policymakers and parents into
debates about the one or many triggers for the disorder. It is an
anxious, urgent discussion, and consensus has been slow to emerge.

Parenting an autistic child can therefore be a job that coaxes out the
activist within. Filley and her husband searched widely for a physician
to treat Damien for what they are convinced are important medical
aspects of his disorder. They have pursued therapies still considered
alternative, with names unfamiliar: chelation, sequential homeopathy. In
attacking autism, they are tireless, for their motivation is the hope
that there exists a true, unfettered Damien who can be released from
this disability.

Still, something about such a fervent pursuit can pierce the heart of a
mother.
Filley writes: “I live the balance between fighting and accepting daily.
I try to show Damien that I love him no matter what while at the same
time prodding for the joyful, responsive child he once was ... because I
know he’s in there.”

Autism manifests differently in each person. “On the spectrum” has
become a catch phrase among parents and professionals to refer to the
belief that being autistic means widely different things for different
people. Damien’s condition is called regressive autism, a phenomenon
long discussed anecdotally but only recently receiving formal research
attention.

For children like Damien, development proceeds across the first several
months of life in what looks like a typical fashion. These babies begin
the purposeful babbling that typically leads to words and sentences;
they respond appropriately to other people; they use non-verbal
communication. Then, around the second year of life, development loses
its forward quality. In Damien’s case, the familiar baby babble turned
into foreign arpeggios, and the friendly personality that was emerging
turned inward. The couple’s little rock star baby, who loved his
father’s guitar, began to be chased by something invisible—literally
running through the day, self-soothing with hand-flapping, not speaking
from his own toddler will but in echolalia, the repeating of phrases he
hears, often at length.

And so, for Damien’s parents, the task is one of rescue. They are
inspired by signs that their little boy is in fact improving, that the
reaching is not in vain. Damien’s vocabulary is growing. He has begun
engaging in some imaginary play—and at times responds to his environment
in a newly connected way.

“We are going to work hard,” Filley says. “We’re watching our resources
and we’re keeping in mind that we can’t give everything to this hope.
And it is a hope. We know that every child is different and that this
hasn’t been figured out. It’s kind of like a 50-piece jigsaw puzzle but
you’re handed 500 pieces.

“We’ll just cross that bridge when we come to it, when, if he’s not
recovered and we see kind of where he’s gonna stay, then that’s what we
work with, and that’s who he is, and we love him.”

Even in the midst of these challenges, there are the hallmarks of a
typical American childhood: the party at which Damien provided a solo
encore of the birthday chorus. For Filley, there are leaps of mama pride
just as every mother enjoys. Some are appealingly unspectacular, as when
a preschool classmate yells “Damien, I’m gonna chase you!” and two
little dudes run, happy. Others feel like momentous harbingers of
recovery to come: “Where is Mommy’s nose?” The small finger
appropriately points at Mommy’s nose. And again, “Damien, where is
Mommy’s ear?” He is in there somewhere. He is here.